A Face to the Disease

While visiting the hospital last week, I was lucky enough to sit in on some meetings between HIV patients and their adherence counselors. As it turns out, one of our old coaches, Vicky, now works at the hospital as one of these counselors. She was thrilled to see me there and ran down the hallway to give me a huge hug. I was glad to have a friendly companion for the morning since the pharmacist was out sick. After introducing me to all of her coworkers, she led me to her counseling room to sit in on a few sessions.

In reality, counseling is a rather generous term to describe the process. The patient enters, hands his or her file to Vicky, and sits quietly while Vicky counts the number of pills left (to make sure the correct number has been taken since the last visit – this is the vague measure of adherence). The only questions they answer pertain to their first and most recent CD4 counts. CD4 counts measure a type of immune cells in the body. Patients, who are very sick, have low CD4 counts, whereas patients who are healthier and able to better fight off infection have higher CD4 counts. CD4 counts are often used to determine whether a person needs to be put on ARVs. A patient is generally put on ARVs when their CD4 count is below 200.

During one of these quick 5 minute check-ins, Vicky had to leave for a few minutes to speak with a coworker. I quickly realized what a rare moment I had and took the opportunity to introduce myself to the female patient and ask if she would be willing to talk to me about her experience living with HIV. Although shy at first, she slowly began to share.

In 2003, she was pregnant and during a visit to the hospital, a nurse suggested that she take a voluntary HIV test. At that point, she had only ever had one partner – her husband – and so she thought she had nothing to fear. She agreed to the test, only to be stunned with the positive results. Immediately, she knew that her husband had been cheating on her. To my surprise, he apologized, admitted that he was at fault, and agreed to be tested as well. In most scenarios, it seems that men will blame the women even if they know that they are at fault and they will adamantly refuse to be tested. When he tested, like his wife, he found that his results were positive. Sadly, when I asked about their baby, she said that it only made it to ten months. Although, she did not reveal the cause of its death, we both silently acknowledged the truth.

Luckily, in 2004, things began to turn around for her, as ARVs became free in South Africa. She jumped at the opportunity and began taking them as soon as possible. In terms of side effects, she said that the first 2-3 days were the hardest part. Now, the drugs are just part of her life and she doesn’t seem to be particularly bothered by them. I was, of course, interested in adherence, so I asked her if it was hard to remember to take the ARVs everyday or if she was embarrassed to take them in front of others for fear that they would know she had HIV. She replied that neither were a problem, saying “It’s my life”. I was also surprised that she was open about her status with family and friends. In fact, she attributed much of her success on ARVS to the support she gets from this network, revealing that “the big thing is support”. When I asked if she worried about what neighbors said or gossiped and how she dealt with stigma, she said that it did not matter. People will always talk. What matters is that her family and friends are there to love and support her.

Although this woman did not realize it, I truly admired her. She has taken so many brave steps in her young life that others will never manage in a lifetime. I hope that she can be a role model for others to get tested, seek treatment and support, and be open about one’s status. Like the majority of the patients I saw, she looked healthy – not the emaciated, sickly image that many people attribute to victims of HIV. She was still living her life with this rough bump in the road.